Breast Cancer Now Forum

Difficult question for anyone to answer as everyone's case is different and only your oncology team will have the best answers. As stated in my earlier posting on here, I have had it all and, through choice, would have just had gamma knife but, for me, to have the best possible chance of living longer I was advised to have WBRT which appears to have had a good result for me. Unfortunately, I am having problems with nausea and sickness which can be a side effect of WBRT but my medical team are working hard to eradicate this. With regard to lap/cap combo I have been told that I have reached the end of the road with this, but it gave me good results for a year although others, I know, have been on it a lot longer. Take advice from your medical team, they have your best interests at heart and will advise you accordingly. Yes, I do wish I could have just had the gamma knife but I'm happy knowing I've given myself the best possible outlook. Hope this helps you. Take care. Liz x ... View more

Hi Wensteed In the last 3 months I have had gamma knife, brain surgery and 10 sessions of WBRT. Out of the three I, personally, would opt for gamma even with the discomfort of having the frame screwed to your head. It is certainly the least invasive of the treatments with minimal side effects. I had 3 brain mets and fought for funding for many months but was constantly refused and it was only when I had a seizure and they discovered by ct scan that the mets had grown that funding was granted. Sadly, when I went to the Cromwell for this, one met had grown too big but they were able to blast the other two. Being a rather positive and strong person, I handle my treatments well but, I have to admit, that after the op and WBRT I am finding recovery quite hard and have realised that it is going to take more time for the side effects to diminish than expected. Push for stereo radio but also ask about Capecitabine/Lapatanib combo which kept my brain mets stable for 8 months and it worked well on my liver mets. Hope this helps and good luck. Liz x ... View more

Hi Olives I think I might be the lady Nicky is talking about as we have met through this forum and meet for a cuppa and chat. I was diagnosed with brain mets March 2013 and put on Lapatanib/Capecitabine combo which shrunk the brain mets for a while. In the meantime, I was constantly battling for funding for stereotactic radio but having no joy. As I was feeling quite well I did not want WBRT which was being offered to me. In October I suffered a full blown seizure and was hospitalised with the scan showing that the mets had grown and the largest was now 2.5cm. As a result of this I was granted Gamma Knife which was carried out at the Cromwell Hospital in London. Sadly, the larger met had grown too big in volume for this treatment but the other two mets were blasted successfully. In December I had the tumour removed by operation but even though the surgeon was pretty confident all the tumour had been removed, he couldn't guarantee a recurrence and advised WBRT which I had 10 sessions of in January. I am recovering slowly from it all as it's been a hectic 3 months but my onc has faith in me and is keeping me on the lap/cape combo as it seems to be working elsewhere in the body and I am also regularly monitored with ct scans. Yes, brain mets are scary but not as bad as it used to be and I often meet with a lady in our hospital who had WBRT 2 years ago and she is still doing ok, which gives me a lot of hope. If you just have the one brain met, then ask your onc about Lap/Cape combo and push for stereotactic radio as it really is a good treatment and nowhere near as invasive as the other options. Good luck. Liz x ... View more

I feel that the main problem with BC is the fact that stage 4 BC is kept 'hush hush' whilst so much is made aware of the mounting success of survival rates with primary BC. Whilst this is wonderful for those women who are able to 'beat' this disease, it still feels like a kick in the gut for us secondary ladies to hear the phrase "I wish I had breast cancer" knowing that our life has been shortened considerably and that there is still so much ignorance regarding metastatic cancer. Do I envy Ms stunt because she has survived pancreatic cancer? Well, yes in a way I do as I sit here with a bald head covered in a horrible rash from WBRT and a scar running from the top of my head to the base where they cut my brain tumour out and wondering if I'm going to be one of the 12,000 statistics this year. Positively speaking, I won't be but, hey, it's only breast cancer Ms Stunt so what am I getting worked up about. Maybe I could sit beside you with my bald spotty head on a Tv interview and you could tell me how lucky I am! Having survived malignant melanoma 9 years ago, seeing family members die of different cancers and now living with secondary breast cancer, I wouldn't wish any type of cancer on anybody as cancer is the pits whichever form you get it and PCA should withdraw this campaign with immediate effect. Liz x ... View more

Wonderful news Nicky. You certainly deserve it after all you've been through lately but you are always so cheerful and chatty at our meet ups. Look forward to hearing about your holiday over our next cuppa and chat. Liz x ... View more

Hi Stephie I have four nodes in my neck which have been there for about a year and my onc always checks my neck to see if there is progression. My last scan showed that the biggest node was 8mm so relatively small although I do look like a hamster somedays because of the fluid that seems to rest there but that could be down to the steroids that I am on at the moment as I've just finished WBRT. I am currently on cape/lap combo which seems to be holding things but my onc has advised me that if the nodes start troubling me then they can be zapped with radio. Has that suggestion be put to you? If not, then it could be something for you to discuss at your next appt. Take care. Liz x ... View more

What a beautiful and touching tribute to Marilyn, the Xeloda Queen who has given us all such hope and strength in the world of living with cancer. Thank you Di for sharing this with us. Liz x ... View more

Hi Jacqui Pleased that you have been able to reach a decision as I know you were thinking about it the last time we met. It is good that your doctor has signed the form for you to give you some financial security but I know that it comes with mixed blessings. Even though we understand and accept our illness it is always hard to see it written on that sheet of paper in black and white and I know how I felt when my onc completed the DS1500 form for me. Let yourself go through the emotions this decision brings and, gradually, you will find yourself enjoying and embracing the free time that you now have. I know that my days are always full, the time goes by quickly and I enjoy being a lady who lunches! If you want to meet and have a chat about this before our November get together then give me a call. Take care. Liz x ... View more

Hi Angelfalls I was also refused my denosumab inj a couple of months ago due to a mouth ulcer in the roof of my mouth which I've had since May along with a sensitive tooth and jaw. I immediately phoned my dentist and explained the situation to him and he gave me an emergency appt for the next day. Had two x-rays done which showed no abscess,holes or any other problems. Dentist unsure if little crater in my mouth is ulcer but without a biopsy being done cannot give me any answers but will live with this little problem rather than have a biopsy. However, because I was able to show copies of the x-rays to my onc and state that there was no problem, she was happy to let me continue with the injections. Maybe a visit to the dentist may help you and give you the answers you need to give your onc for your injections to continue. Good luck. Liz x ... View more